ANC drop again while on Neupogen, What's next?

[Healed24]

Yesterday I got some more bad news from my doc and I don't know what I should do next, so I'm hoping you guys can give me some advice. I'm on week 24/48 and since week 2 I've had problems with my ANC levels. After my first shot my ANC dropped to 200 (from 2000 before tx), so my peg dose was lowered to 135ml (I was on a reduced dose for 20weeks until my ANC levels stabilized with Neupogen). My doc put me on neupogen and my ANC increased to 1200 so last week he put me back on the full dose of pegasys (180ml). After one shot of pegasys at 180ml my ANC went from 1200 to 300. Now my doc wants to put me on Neupogen twice a week, and I wanted to know if anyone gets two injections of Neupogen a week? Also should I just let the doc decrease the dose back to 135ml and stay on the one dose of Neupogen, or should I try and stay on the full dose with the two shots a week? I'm really scared because I don't want to keep putting more meds in my body, but I don't know what to do. Also to make matters worst, I'm also on 40,000 Procrit and although my Hemoglobin levels were steady at 10 but they are starting to drop. My doc wants to add another 20,000 of Procrit, which would mean another shot and more meds (when it rains it pours). I'm starting to get really fed up with the whole tx and I really don't know what I should do (keep going or just quit). If anyone could offer any advice I would really appreciate it.

WEEK 24/48
GENO: TYPE 1A
VIRAL LOAD PRIOR TO TX: 208,000
WK 11 <10ML
STAGE 0, GRADE 0
WEIGHT: 130 POUNDS
PEG: 180ML (FOR NOW), RIBA 1000MG
HAD VIRUS FOR 7 YEARS

BROOKE

[Healed24]

Thanks you guys. I really needed your advice. Luckily I have an appointment with my doc on Monday and I'm going to discuss all my options with him (continuing with the added meds, lowering the  dose, or giving up completly). I'd hate to give up in the middle of tx, but I don't want to drive myself crazy in the mean time. Unfortuately I didn't get a 4 week PCR (I didn't know I should have), so I don't know if I would have been able to qualify for the early disconnection of tx. But, I am definately going to talk with him about my chances of obtaining SVR with shortening (or even quitting) tx. The only thing is that my doc has me scared to wait for treatment with other meds. He said that the other meds might not be better than the current tx, and he doesn't know if, or when they will come available. So that leaves me with the question of what do you do in the mean time. Do you just wait and let the liver get worse or is their anything they can give you to stop damage. Although I didn't have any damage I did have elevated liver enzymes when I started tx(AST/ALP 74 and 63). Although they have stabilized what does that mean? I just have so many questions. I just don't want to stop tx and then this disease kills me in like a year or two. Please help you guys.

Nyhepc: If you don't mind me asking what week, grade, stage and geno are you?

Kalio1: Are you saying that I am on the wrong dose of riba? Should I be at a lower dose? I thought I was on the right dose for my weight, but I sure would love for that to be wrong and to eliminate one or two pills?

v eggie dip: You said that you were going to wait to treat until better tx comes along, correct? If so what are you going to do in the mean time? Did you doc give you anything to slow or prevent any other damage? If so can you let me know what.

Jim: So if I'm correct you've been on the added Procrit and it still isn't helping? If so what are you going to do next if the added Procrit doesn't kick in?

Thanks to all
Brooke
GOD BLESS

[johnisme]

Hi there, Good luck on what you decide to do. But one thing you won't die from this in a year or two. At your grade and stage you have many more years ahead of you. And if you take care of your liver theres a better chance you'll die of old age then hep-c. Ive had hcv for over 35 years and while im now at stage 4 grade 3 i was a heavy drinker for 20 years which sure didn't help my liver any. im hoping to start tx. soon but even at my stage i still fill pretty good. Being stressed out over this can be worse then the hcv.

[EarthMan]

Brook,
There is more involved to just quiting at this stage. Once a person goes on treatment with the current Pegs/Ribavirin and discontinues, the VIRUS MUTATES. It will also make your viral load increase significantly. Please take this into consideration also when evaluating what course of action you are going to take.

This will have an impact on future treatments if you decide to discontinue.

EarthMan

[jmjm530]

As stated, hepatitis c is generally a very slow moving disease. I don't know how long you've had it but for me it's 37 years and I'm still a stage 2-3.

Your doctor is taking a very pessimistic view of the newer drugs in trials. 2-3 years is what a lot of us are hearing and the results, while not guaranteed, certainly are promising. Again, you have so much time to wait if you so choose that all cards are in your favor.

As to what I'll do if my hemoglobin keeps dropping, I really will have no choice but to reduce the ribavirin at some point. I don't think going beyond 60,000 U/week of Procrit will make any difference. So far the jump from 40,000 to 60,000 hasn't produced any results.

My NP said "I don't want to alarm you but Interferon can produce kidney damage"...Geee...they never mentioned that BEFORE treatment. LOL. In other words, she's suggesting that my kidney function may be somewhat compromised and that is resulting in a lower hemoglobin. But so far my Creatine is still in the green zone.

To repeat it again, there's a lot about these drugs they just don't tell you going in and a lot they don't know regarding long term effects. I still wonder what being anemic for 48 weeks will do to my brain function long-term. Because I was told my liver damage was 3/4, I really didn't have a choice. Have a good talk with your doctor and ask him what he really knows about the long-term effects of all these drugs we're taking. And keep looking in his eyes.

-- Jim

[jmjm530]

I have seen similar thoughts posted here and on other discussion groups about the virus "mutating" because of treatment, however haven't seen any studies, which doesn't of course mean they don't exist.  But I would like to know what are you basing this statement on?

[EarthMan]

http://www.epidemic.org/theFacts/hepatitisC/anatomy.html

Jim,
The Hepatitis C Virus has the ability to mutate even without treatment. That is why a Vaccine has been so elusive.

EarthMan